Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
[I haven't posted for a long time, as I have been barely hanging in there. I know 2 people tried to ask me questions, and I didn’t respond---sorry.. Eventually, I will answer them. I also lost my password for a long time.
This is REALLY long, sorry (shows how upset I am). I will put the main things in bold. I also see the other post about doxy and sun---arghh!].
I had cataract surgery in 1 eye July 2, and 2 days later had scintillating lights in that eye a lot, obscuring my vision. My surgeon thought it would go away as my brain got used to it; she said it was light reflecting off the replacement lens.
When it didn’t improve after a month, she was alarmed and sent me back to my retinal specialist, as she thought it was inflammation. Both doctors are extremely experienced and work out of an Eye Institute at a top teaching hospital in the country. I know they are as good as it gets.
The retinal specialist years ago said that I have a rare inflammatory condition in my eye and showed me photos of my retinas being filled with black lesions from Lyme. (Both he and and an 83 year-old top retinal teaching specialist from London had never seen this condition before!!).
Yesterday on a scan, the retinal specialist saw a white area of increased inflammation in the retina (much increased from the end of June before the surgery). He rx’d doxycline, as it has good anti-inflammatory properties , to decrease the inflammation. He said it penetrates the retina well.
He said he could give me a steroid shot in the eye that day, or when I come back in a month, if it’s not better. He wasn’t lobbying for the shot. Nor was I!
I am going on vacation this Saturday for 3 weeks---for the first time in years!
I asked about Biaxin or Bactrim; he said, no, doxy. I didn’t press further or discuss my vacation and sun sensitivity, thinking I had to bite the bullet. At home, I called and left a message asking if I could take another abx. A colleague got back to me; he said nothing else is effective for this.
I am heart-broken; I never get out of the apartment at all, except for medical appointments. I can’t even manage short walks. I’ve been home-bound for about 13 years. I haven’t left the city in 2 years, not for a day---I can’t travel.
Our only opportunity to get away is this: to house-sit for our friends who have a house on a little lake when they go away. They’re 40 minutes away, so do-able for me. I love it there; it's so beautiful and I love to swim.
I have very fair skin and have to be very careful in the sun as it is; I don’t do sun much anymore, even if I had the physical capability (which I don’t!). But with doxy, I don’t see how I can sit on the deck, even in the shade, swim, or walk to the nearby lake to swim. What??? I’m so upset!
He put me on a low dose (low for Lyme): 100 mg twice a day. But that is considered a high dose in terms of sun-sensitivity. And with my easily burned skin, I am at more risk of the phototoxic burn that can result.
I am still going to go away, but I don’t know what I can do outside of being in the house!! I can’t swim at dusk; the mosquitoes eat you alive then.
Now what?? I can never catch a break. I’m supposed to have the other eye done Sept 17th.
One study shows that at 200 mg a day, 40% of people get this reaction, which is not super high, however . . . I know how bad it is. I don’t want that; I already have horrendous burning pain over a lot of my body from the Complex Regional Pain Syndrome, aka, RSD. And I always seem to be the worst, or only one, at everything like this. I’ve had it.
Ironically, the scintillating lights are much better today, but not gone.
[ 08-08-2018, 11:44 PM: Message edited by: Rumigirl ]
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
OH my gosh. That is just horrible timing. Thanks, BODY!!!!
I guess you will have to do what you can under the circumstances. Please be extremely careful, OK?
The change of scenery will be helpful, right?
I pray the doxy will resolve this issue for you, Rumigirl.
We've missed you!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, Lymetoo; I never meant to stop posting---just coping!! Plus, horrible computer and internet issues, which still remain after lots of time spent on trying to fix them.
Today, I had a medical appt, and it was horrifyingly hot. Long sleeves, long pants, covered feet, sun block on hands, face, neck, umbrella(!), and walked in the shade as much as possible. Sweating tons, it was so hot.
My understanding from six's experience, etc. is that you don't have to be in the sun, just in the bright light for this to happen. If so, being in the shade isn't sufficient (am I right?), an overcast day can still be a problem. Are both true?
Swimming in the sun, or possibly even overcast, would surely be a no-no. Yes, I could wear a long shirt, even gloves (and look weird), but couldn't do anything much for face, neck, ears, except sunblock, which surely wouldn't do.
What the blazes??
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
I was taking I think 400mg of doxy when I went on vacation, and I was okay. The only time I had a lot of trouble was when I went to the beach very close to noon on a sunny day. I kept forgetting that I had to be careful to stay out of the sun.
I have fair skin, which seems to have gotten lighter since I got Lyme. I used to tan really well, but not any more.
You might be fine at a lake (I'm assuming there's some shade around). Just pay attention if your skin starts to feel like it's burning.
They do sell long sleeve swim tops that go over your bathing suit and are very lightweight. I think Land's End has them. Sometimes I wear a hat when I swim.
Coolibar sells special "swim hats", and lightweight jackets, but they've really raised their prices recently. I bought one hoodie from them that I really like, but now I can't afford to get another one.
I wear pants and long sleeves a lot, just to keep all the mosquitoes and other insects off, when I go for a walk.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, Lyme248 . I am looking at ordering a swim hat (yes, expensive!) from coolibar, and a swim shirt from Land's End. BUT, still, that wouldn't totally protect neck, face, hands. Of course, I would use high protection sun block with zinc or titanium oxide in it.
I do swim on my back a lot, plus underwater; surely neither would work well with the hat.
I still wonder about the questions above in bold. six, if you see this, can you please weigh in? Or Tincup.
I know that there probably are no completely definitive answers, as everyone is different. I NEVER tanned much; I have next to the most sun sensitive skin on the chart, as in burns easily, doesn't tan much.
I'm just afraid that even with a hat, a swim shirt, hefty sunblock, and only going late in the afternoon, that it may well not be enough. There is shade there, but only on the beach in the late afternoon, not in the water.
And what about light not on a sunny day? Or even in the shade? Or in the shade on the deck of the house (near a small lake).
Arghhh! There seems to be no end to all of this you-know-what! Endless issues from long-term TBD's. Preaching to the choir, as usual.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
I really think you would be okay. A small area of skin getting exposed to the sun, I don't think would cause trouble.
I was out in the sun for most of the day without sunscreen on my hands, and they were only slightly red.
Probably the higher the UV index that day, the more likely you are to get burned. It would really depend on how thick the clouds were, whether they block the sun or not. In the shade is probably okay. I don't think any kind of light other than sunlight would be bright enough to bother you (unless maybe the type they use for movie sets).
You probably would have to be very careless to get a reaction, and even if you did, it probably wouldn't be worse than a regular sunburn. I've heard plenty of stories of people who forgot and went out in the sun a lot and turned red, but they were okay.
A friend of mine who got cataract surgery also had vision disturbances for a little while afterwards.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
| IP: Logged |
posted
Just be VERY cautious the first two days to see how you react.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I agree, Lymetoo. Lyme248, thank you, but I don't think that I can just assume that I will be ok, sadly.
I am still hoping that six or Tincup will weigh in. Maybe I have to PM six, or email Tincup (if she is still answering emails).
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Saw your email then came here to read the rest.
This is the first thing I thought of...
tiny.cc/209qwy
I can't get it to "link", so copy and paste the link in a search bar thing.
posted
Six won't have her computer until tomorrow.
She said to play it by ear. If you are already having trouble just driving or riding in the car while taking doxy, then you will need to be very careful.
So .. watch for reactions before getting out there on vacation. (my words)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OH MY GOODNESS!
As much as you've been through and have survived- and I repeat SURVIVED... and THIS is what you are fretting over?
With all due resect...
I'd be more concerned that my flip flops matched my bathing suit!
Rumigirl, don't you DARE, I say don't you DARE let a tick ruin this fun for you!!!
The tick already got more than his share from you and all of us.
DON'T LET THE TICK WIN!
Your best defense is common sense.
Get some GREAT sunglasses to cover your eyes totally, that wrap around your face, and have special eye protection.
Use your sunscreen as if you were a normal person, not the Pillsbury Dough Boy getting ready to be baked at 450 degrees!
Stay in the shade as much as possible when it is avalable.
And if it is a hot day and you want to swim....
GO JUMP IN THE LAKE!
With your energy level it's not like you will be practicing for the Olympics by swimming for 8 hours every day!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Now that I've made you laugh.... (I hope or I am in big trouble!)
To reduce eye (especially eye) and other inflammation I'd start on this immediately. I've used it multiple times for eye inflammation and it has always worked.
I have used it instead when prescribed steroids for my eye inflammation that I didn't want to take and the top notch eye doc was shocked because it worked faster and better than steroids.
Take doses you can tolerate.
I can't tell you what doses because I am too sensitive and take too little (compared to what most people would take) much of the time. Maybe read the labels!?!
Yes, being in the shade outdoors, especially because you think you can't see the sun so it won't get you, you will still get burned.
Sometimes some of the worst burns are from shady days at the beach. What many don't realize is that the sun can still see you, so just be aware and do things in MODERATION.
How about a porch umbrella for the patio deck? And a smaller beach umbrella?
I've seen small tents recently at the beach for people (especially little kids) that are sun sensitive. Here is a bigger one as an example that might be an idea?
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, TC, you are too much! Butch and the Sundance Kid . . !
No, I DON'T want the ticks (there were many, many) to win! But I will have to be very careful. I know that you've had this reaction.
Where do you get sunglasses like that?? I haven't seen any like that.
On top of that, I am having trouble with the vision in both eyes, 1 that hasn't had the cataract surgery yet, and the other with the scintillating lights (which are getting better). When I put on sunglasses, I really can't see!
Lymetoo, thank you. I also PM'd her.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
TC, you were posting while I was writing my post!
I'm sure that you meant this link as a joke. But, actually, it would help, if it weren't so extreme and scary looking! My husband said, "You'd scare the children."
quote:Originally posted by Tincup: And with the right accessories, my bet is this wouldn't look too bad on you.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, great idea. I do take vit C, and have proteolytic enzymes, like Wobenzyme. I'll take them, increase my C and get the bromelain and quercetin. I take other anti-inflammatory supplements, too
Then, there's trying to space out the abx & nystatin, the probiotics, the enzymes, the vitamins & minerals (not with doxy)---they can't be taken at the same time . . . every Lyme person understands this one, but it's adding the enzymes, too. Thank you, though.
From TC: To reduce eye (especially eye) and other inflammation I'd start on this immediately. I've used it multiple times for eye inflammation and it has always worked.
I have used it instead when prescribed steroids for my eye inflammation that I didn't want to take and the top notch eye doc was shocked because it worked faster and better than steroids.
Take doses you can tolerate.
I can't tell you what doses because I am too sensitive and take too little (compared to what most people would take) much of the time.
posted
Rumi, so sorry to hear this, such an inconvenient time to require doxy, and that things have been so challenging (probably an understatement) as of late
I pray your eye continues to heal without further complication and that the second one gives you no issues at all.
It sounds like this will be a great getaway for you, and very much needed. I hope you are able to relax, recharge, and feel relief, and that the worry of a doxy/sunlight reaction does not dampen your trip.
To echo others, do be extremely careful. A burn while on doxy can happen very fast. It can happen just as easily on a cloudy overcast day as it can in full sunshine. Even in the shade you are still subject to reflected light off of everything else.
It's better if you can cover with tightly woven SPF rated fabrics rather than loose weave, which lets a lot through. You may consider a high physical sunblock over the chemical types.
Since you are just getting started with the doxy and it's not a super high dose, maybe that will allow you some time for sun and swimming before things build up enough that a reaction could take place, if it was going to (staying with positive thoughts lol)
I got burned a couple times while on doxy with very short exposures. The burn felt like a chemical burn, different and worse than any sunburn I've experienced.
I don't know if it makes a difference, but I think I was on it a while before the first burn (I was also super careful and fully covered if I left the house). I am pale and tend to burn and barely tan (which I later discovered was remedied by getting my D3 up into range, but no idea if it would have prevented a doxy burn).
My husband wasn't on doxy very long and his hands burned while driving, couple other burns after that. He's dark complected, tans darker, and never burns, so there's probably other unknowns at play.
Anyways, I hope you have a wonderful time and enjoy your vacation, no matter what you end up doing to enjoy it.
I'm saving TC's recommendations and then some. I am ogling me some cooling arm sleeves now. And that hat would have been easier than trying to wrap a shawl around my head and neck while wearing a sun hat Posts: 474 | From US | Registered: May 2014
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Arm sleeves?? Never heard of them. But my husband just said he bought some for biking.
Thank you, gz, that is VERY helpful feedback. Sigh. It seems like the whole head, neck, face thing that TC gave the link for WOULD really be helpful----but around other people?? Would't it freak people out?
What you said about cloudy days and the shade was exactly what I was thinking; the sunlight is still there. Waaaah!
Will I ever get to be a person?? You know what I mean. I once had a life. (That's another issue altogether).
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Rumi- here are some more ideas that I just put together for you and others. (the links were all too big to fit here, so they are now on the website.)
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, wow, TC, you are amazing!! Thank you so much!!
I ordered long-sleeved swim shirts from Land's End. I am ordering the hat with protection on the neck and face. You can detach those parts, if you want.
I do have to order protective sunglasses---after I determine that I can see in sunglasses!
Have to see if I need a different sunscreen or not. I have Waterbabies, 55 (or 50?). It has zinc oxide in it, besides other stuff. The other stuff may not be great healthwise. Have to look on EWG.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
TC said wear sunblock; the doctor's office said the same. But does anyone know if that works (not as the only solution). I WILL wear sunblock with physical barrier, ie, zinc oxide/titanium oxide, on the areas that may not be covered.
I have Waterbabies; I don't know if I should get Blue Lizard sunblock from Australia (available nearby, I think). Don't know if the zinc is higher percentage.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
TUTU- Before I said "yes" the sunblock works- always has for me and others I've noticed and I worked outdoors for a few years while on Doxy every day...
I CHECKED IT OUT TO BE SURE! Darn these caps! SORRY!
My "T" is still broken on my keyboard and to make a capital t I have to put the caps lock on. Then I forget to take it off! Oh well...
Anyhow, here is some medical advise below. Pretty much what Rumi already knows.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Whew, thank you, TC!! I know that you probably said as much before. But the fact that you worked outside on doxy for years---with lots of sunblock, and were ok, is a lot!
Also, using the sunblock UNDER your clothes---wow. I did order 2 long-sleeved sunblock shirts.
I realized that besides my regular sunglasses, I have a pair of wrap around ones they gave me recently after a dilated eye exam, so I can use those!
I have regular sunblock, high UV rating, albeit not great ingredients, but not greasy and works. Plus, I have the Waterbabies, 50, with zinc oxide (the white stuff, sort of greasy). It is rated well on EWG, in terms of ingredients, not perfect, but good.
TC, I think your job is finally done on this issue for me, and for others!! At least this time around. I can't thank you enough. You are a font of knowledge and experience in all things Lyme. And you are dedicated beyond measure. Thank you from the bottom of my heart.
Mods: Shouldn't this thread be in a sticky? This info is so important.
quote:Originally posted by Tincup: TUTU- Before I said "yes" the sunblock works- always has for me and others I've noticed and I worked outdoors for a few years while on Doxy every day...
I CHECKED IT OUT TO BE SURE! Darn these caps! SORRY!
My "T" is still broken on my keyboard and to make a capital t I have to put the caps lock on. Then I forget to take it off! Oh well...
Anyhow, here is some medical advise below. Pretty much what Rumi already knows.
posted
I hope you had a great time! Sorry I wasn't here to answer. On an overcast day, I would have had problems since the sun still shines through. In the shade, I wouldn't have since the tree would be blocking the sun.
Some people have trouble, others do not, so there's no way of really knowing whether you will. So, how'd it go?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by sixgoofykids: I hope you had a great time! Sorry I wasn't here to answer. On an overcast day, I would have had problems since the sun still shines through. In the shade, I wouldn't have since the tree would be blocking the sun.
Some people have trouble, others do not, so there's no way of really knowing whether you will. So, how'd it go?
Thank you, six. I haven't gone yet! I was supposed to go this weekend, but have had so much to do before I go---plus, have to bring the kitchen sink with me, due to all of my conditions---arghh!
I was going for 3 weeks; now it will be around 2 1/2. I haven't had any chance like this in years. Last year I couldn't go, because I was having breast cancer surgery with lots of complications.
It has been raining w/ thunderstorms, quite a bit more forecast. But, I will have to be extremely careful. I'm not sure what to do about swimming. There is no shade on the lake itself. I can go on overcast days, but . . . will that be ok? No one can tell me, as it's individual.
I ordered sunblock long-sleeved shirts, and I'd wear high spf sunblock with zinc oxide. Step by step, we'll see.
Thank you for weighing in.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
And on sunny days, who knows? With sunblock? No go? It remains to be seen. Sigh. If I did try it, it would be late afternoon. But I will have to start with smaller steps.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
quote:Originally posted by sixgoofykids: On an overcast day, I would have had problems since the sun still shines through.
- I would think this is generally true, not just individual. So be very careful.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yes, sigh. Thank you, Lymetoo. Ironically, a lot of rain is predicted, but not every day, of course.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[lol]](graemlins/lol.gif)
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic